Interstitial Cystitis (IC) Support Group

Interstitial Cystitis (IC) is a urinary bladder disease of unknown cause characterised by pelvic and intense bladder pain, urinary frequency (as often as every 10 minutes), and pain with urination. It is not unusual for patients to experience nocturia and pain with sexual intercourse. IC is also known as painful bladder syndrome (PBS), particularly outside of the USA.

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deleted_user 07/03/2008

I was diagnosed originally w/ IC and then later undiagnosed after a definitive test. Now I'm diagnosed w/ vulvadynia and I believe that that best describes my symptoms.

I have pain on the outer ring of the vagina during intercouse where I feel a burning and bruising type sensation. I have pain on other outside vaginal areas and inside cervix/uteran areas but the worst is at that outer ring. Sex is IMPOSSIBLE and I often go a year or so and not have sex b/c it is so painful. I can't afford any medications right now or to see a pelvic specialist (I've already seen every other specialist possible for this problem) so does anyone w/ similar symptoms have any advice what do to make sex less painful?????????????????????????

Thanx

deleted_user 07/13/2008

I have a flare after sex every time for 22 years. It's gotten to the point where my husband is scared of touching me. The best thing to do is take some pain meds before hand. It would also be good to ask your uro.
Sorry that you're having such a rough time with it. This I.C. stuff is hard to take.

deleted_user 08/08/2008

I have that same problem. I have never heard of vulradynia before maybe I should ask my doc about that because during sex thats where my pain comes from. I wonder is that just because of the IC or could it be the other. I have no clue how to make sex better I wish I did. I hate that we have to deal with the Ic pain and then it take away something that we all need and love too.(good sex) Wish I could be more help ~hugs~

deleted_user 08/15/2008

Im very sorry for everything that you have to go through. Unfortunately, I am in the same boat as you. I havent had sex with my husband in about 6 months because it is so painful. I have also seen a pelvic therapist who told me to either ice or take a warm bath before sex. This way, it helps relax your pelvic muscles. It doesnt always work but its worth a shot. Also, doing pelvic exercises on a daily basis seems to help me a little bit. Taking pain meds before hand does help too. It is a very difficult process to go through. Please let me know if you have any further questions. I hope that your pain will get better.

deleted_user 08/20/2008

Did you go to a Vulva / GYN specialist? I went to one and found out I had a really bad yeast infection from to much Antibiotics it took months to get better. I still have IC. I can feel your pain I had so much of it in my life.

deleted_user 08/20/2008

So you don't have Ic at all?! What determined this? What are your symptoms?

deleted_user 08/20/2008

I also have that type of pain with sexual intercourse so I'm very curious. I have severe urgency and frequency but no pain other than pelvic floor pain during sex and pain in my vagina with every thrust. I use Astroglide lubricant and it's good.

deleted_user 08/20/2008

So u had cystoscopy and diagnosed w/ IC and now undiagnosed? I'm confused how that happened!!!

deleted_user 07/04/2012

Use coconut oil, its awesome as a lub. You wont believe how much better it will feel down there. Also, I make essential oil suppositories with coconut oil. I get sport bottle ice cube trays(the slender oblong shaped ones) and melt coconut oil, and combine them with whatever essential oils I want to use and pour em and freeze em.

The oils I use are tea tree, lavender, rosemary (personal favorite) bergamont, lemongrass, frankenscence (spellcheck??) manuka, tyme, oregano oil, Myrrh, etc, etc. They may burn you, so trial and error. Only start with a few drops

RascalFlattsFan 04/17/2013

I also have a lot of vaginal pain. I've been wondering if I have vulvadynia instead of IC. My gynie made the diagnosis of IC. I'm been trying to get an appt with a urol/gynie instead. Am I searching for the wrong specialist? Do I need a vulva doc instead? Yeah, add me to the confused, looking for answers list.

RascalFlattsFan 04/17/2013

oh geesh. I saw just the date of the original post. 2008? I'm sure this person has moved on from the IC page

thankGod 07/28/2018

Get tested for something called Ureaplasma. Dealt with this for 20 years. Ureaplasma is a microorganism that does not show up on urine cultures. There’s a special test for it and it requires a special antibiotic called doxycycline. PLEASE INSIST ON THIS TEST & DO NOT BACK DOWN!! I’m 46! Don’t let your life be ruined like mine WAS!

thankGod 07/28/2018

Ureaplasma causes this vulvadynia, IC, all of it!!!! TRUST ME PLEASE! Trying to get the word OUT!!!

isabelle1954 02/15/2019

I haven't had sex with my husband for years, but there are other ways to give pleasure, and I usually have a sitz bath after and lie down and the pain isn't too bad.

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